“Do you know what that doctor wrote down?” she demanded.
Yes, I did know. I had taken her in for an opinion on her increasing forgetfulness.
“Dementia!” she sputtered. “How could he say that?”
I summoned my reassuring reasonable self. “Mom, remember we went in to talk to him about your memory?”
“We did?”
“Yes. We discussed it,” I said. “That’s just medical language for that conversation.”
“Well, what did he say?” she wanted to know.
“That your memory isn’t what it used to be,” I said, “But we knew that.”
She chuckled, “I guess.”
She didn’t ask the next question and I didn’t answer it. Where would this lead us, and when?
Like many others, just you reach the point when your kids are launching their own lives, and you think that your life is about to become your own again, your parent begins to need you in a whole new way. As she teetered on the precipice of neediness and debilitation, you realize that it threatens to take you down too. Your narrative changes. The one about the largely joyful journey toward your kids’ independence is replaced by the one about the descent into your parent’s encroaching and eventually total dependence.
The best thing to say about this experience is that it gives you the smallest peek into what she must be going through. The worst thing is that it won’t go away until she dies. The dance between grief and relief has begun.
At first, I deny. I explain away the crumpled fenders, forgotten appointments, inability to work the remote control. I tease her, “Good thing your head is attached or you’d lose it, huh Mom,” when I really want to scream, “We talked about this two hours ago – how on earth could you forget?”
After the totaled car, the terrified call that a hallucination of a boy is in the corner, the forgotten pan on the stove that led to the condo building being evacuated, I couldn’t deny anymore.
That’s when the first unexpected wave of relief arrived. Once I used my energy to face reality instead of run from it, I gave up my dreams of someday getting to say, “Yep, she’s 94 and sharp as a tack.” Instead it became, “Well, she’s 79 and her memory is a problem, but she still knows me, so that’s something.”
I developed a plan. I scheduled appointments for us to visit assisted living facilities which she forgot to get dressed for and then declined to attend. I went alone and chose the one that had daily current events discussions over the one that had residents paste construction paper into mosaics.
Then I tried to scale the mountain of her resistance, “I’m perfectly fine. I don’t see why I can’t just stay in my condo.” I got nowhere. Then she fell again and the doctor forbid her to return home without 24 hour supervision. Reality trumps desire.
I picked the nicest corner room overlooking a pond, and moved her in, staying over the first night to ease any confusion. When I walked out the next morning into a gorgeous fall day, I realized that from now on there would be people looking over her all day and all night. This day that I had dreaded for so long brought another surprising wave of relief.
Weeks later, after I had cleared out her condo and put it on the market, I drove her over there, wondering if the sting of her forced departure had been soothed by her new safe surroundings. She looked at the building without recognition. She wasn’t pining for her old independent life because she couldn’t remember it. More relief.
As her awareness of her plight faded, other ties with her past and expectations for the future fell away, and she lived more and more in the moment. We regularly perused the scrapbook my daughter made for her. One day, she no longer recognized the picture of Bob, the love of her life who died when they were 34.
“Who’s this?” she asked.
“That’s Bob, your husband, my father,” I said.
“Really,” she said. She took a closer look, bewildered. How could you forget your own husband?
Rather than continue my campaign to get her to remember, I could let each visit focus on right now – how the sunlight looked on the trees in the courtyard, how the breeze stirred them. By now, she was in the memory unit of a nursing home, which became a godsend. A multi-cultural team of caregivers somehow managed to see through the fog of her dementia and find the bright, funny, kind person she had always been. Thanks to them, there was lots of laughter still to come. Who knew to expect that?
As she lost language, we no longer struggled to get ideas across to each other but settled for sharing the moment. Every couple of weeks the hospice social worker left me a message like this: “We had a wonderful visit today. I held her hand and we listened to music. She watched me with those beautiful green eyes and I felt that she was really with me.”
I learned to do that myself and be satisfied. This new way saw us through to the end. My daughter and I were present, my son on the phone. We had music, and the hospice nurse whispered a message into her ear. “Go Jessie, and dance with Bob.”
Surprised, I found myself smiling. What a thought. We held her hands and soon she did, peacefully.
Almost right away, I began to regain memories of happier times and had an easy time recalling her backbone, her independent streak, how we’d collapse in laughter at the same oddball occurrences. It was as if I could finally detach from her ten-year decline and reclaim the whole of her. Again, the dreaded worst happened and comfort appeared. If only I’d known that from the start.
CBH 06/10
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